Consensus was: safety is improving – from 2011 the mortality rate has been 0.3% rather than 1-2%. Due to impressive rates of NEDA ( no evidence of disease activity – relapses or on MRI) – 80% at 2 years and 70% at 4 years in one study;

Yes, but ONLY in cases of early/new, highly active/aggressive relapsing remitting MS, where person is young, still walking, and treatment with first & second line treatment have failed.

And now for something completely different, and please DO try this at home(!): Seriously, I will be

This beautifully carried out RCT had people with progressive forms of MS taking 1,200mg of Lipoic Acid, a supplement often sold as an ‘anti-oxidant’, and also called ‘alpha-lipoic acid’ once a day. A control group took a placebo.

After 2 years, the group taking the lipoic acid had a whopping 66% less brain atrophy on MRI scan ( showing less loss of brain cells), taking them back to a normal rate of brain atrophy, and half the number of falls.

Love it when something so harmless is investigated properly and found effective. Especially good to have something positive for progressive MS!

showed that as we know, effectiveness in reducing relapses from lowest up goes: Interferons, then Fingolimod, then Alemtuzemab and Tysabri. The last 2 showed the same effectiveness in preventing relapses. Natalizumab also showed improvement in disability in the first year, but not after that. and as we now the side effect profile and the way you take it is very different. Tysabri also has a rebound effect if and when you stop taking it.

Alemtuzemab

research was presented that showed this drug performing very well in ‘resetting’ the immune system. Around 60% of people did not need more than 2 infusions, and NEDA ( no evidence of disease activity) was very high., but only when used EARLY. Time to change from the ‘wait and see’ attitude? This is the push from leading MS experts. Maybe check in with the MS Brain Health campaign if your neurologist is dragging their feet.

Vitamin D

very strong evidence coming through from numerous sources that notwithstanding previous medical controversies and uncertainties, all people with MS should be on high dose from diagnosis – 4-5000 IU daily at least, and testing ( backs up info already posted on this blog) MS Base ( a database with over 41,000 people with MS’s records) showed a clear seasonal peak in relapses around the world, at the end of winter; with a time lag, shorter in colder countries. Low vitamin D levels were the strongest risk for progression in another study, and added a further anti inflammatory effect to people already on a disease modifying treatment, in another.

One study found that people with MS given 100,000 twice a month for 2 years had a 60% reduction in relapse rate, and a 78% reduction in new lesions, compared to placebo. Powerful stuff, hopefully enough to finally swing the doubters.

Siponimod for progressive MS

presented as promising new treatment but I missed that session so – investigate!

Scientific highlights presentation – was split into 3 sections ‘migration and CNS injury’, ‘Gut and Food’ and ‘remyelination and oligodendracytes’

At the end of the event, I was really surprised to see these slides in the highlights – I missed the full presentation but one slide went like this:

Went on to describe how animals with this experimental model of MS respond very well to hyperbaric oxygen: Oxygen therapy reduces pattern 3 demyelination.

So maybe we will see some new research showing usefulness of hyperbaric oxygen? If you can access it, I always say that it’s worth trying, and observe the effects on yourself.

Diet and Gut in MS

Feels like finally, the importance of aspects of diet is being addressed and listened to in MS research. In fact all present were enjoined Not to ignore environmental factors. Hurrah! a strike for logical thinking!

This was a feature of quite a lot of research at ECTRIMS. Lots of research on the role of the Biome ( bacteria in the gut) and how it affects MS. Interesting, exciting, but we still haven’t nailed practical application yet, so best bet is Take a daily probiotic capsule or powder, with as many different strains in as possible. And do these things, discussed previously.

Being overweight was identified as a serious risk factor for both developing, and worsening with MS. If you’ve got pounds to lose, check out the excellent ‘Fast Diet/ 5:2 diet’, showcased by Micheal Moseley on the BBC -https://thefastdiet.co.uk/ fasting also has benefits for inflammatory conditions.

Salt:

salt stored in the skin was posed as a driver for auto-immune neuroinflammation in one paper. People with MS were found to have higher levels of salt in the skin….so that too… we could all cut down our salt – most is found in processed foods… and as you do it, your tastebuds acclimatise so it won’t mean you won’t taste your food.

Ending on a high

Conference ended on a high note, celebrating the huge progress that has been made in preventing disability – progress that started even before the availability of the disease modifying drugs, but has in recent years added a further 15 years of non-disabled life to the average MS-er, and is still making leaps and bounds.

I hope I’ve made an accurate summary of the sessions that I attended – mistakes are possible, and they will be all mine. If you spot one, please let me know!

If you have Relapsing Remitting MS, with 2 relapses in the past 2 years, and walk without a stick, then it’s important to know about this.

Alemtuzimab, ( called Campath whilst being trialled at Cambridge for many years,) is a powerful immunosupressant, ( like chemotherapy), which is given as an IV infusion, has been shown to be very effective in stopping relapses and disease activity in MS – including progression of disability, as long as it is given before disability sets in.

In a trial of Alemtuzimab reported in 2008, compared to interferon beta-1a, alemtuzumab reduced the risk of sustained disability by 71%. There was also improvement of disability scores in the treatment group. After 36 months the mean disability (EDSS) score in the alemtuzumab group had improved from 1.9 to 1.51 while that of the interferon group worsened from 1.9 to 2.28. After 5 years, those who had had alemtuzimab had 67% less disability, and 72% were relapse free, compared to 41% of the interferon treated group.

This makes it much more effective than the current disease modifying treatments ( DMTs), which can show reduction in relapse rates, but not prevention of progression.

This slide, from Neurologist Joanne Jones, at Addenbrookes, shows the placement of current drugs ( including stem cell treatment) in relation to efficacy ( effectiveness) and safety.

If you can see this, stem cell is at the top on the left, indicating highly effective when it works, but risky. DMTs are at the bottom on the right – safe – but not so effective as the newer agents.

Nataluzimab is the generic name for Tysabri.

It also has more risk of serious side-effects than DMTs, so weighing up your risk of serious disability from MS against risk of contracting rare but serious side-effects, needs to be thought about very carefully.

So what are the risks of treatment? About 30% of people treated with Alemtuzimab get a different auto-immune problem at some point after treatment, and this is generally a thyroid problem, which can be treated. About 1 in 100 develop a blood clotting disorder, ITP, which can be treated if caught, but one person has died. In trials on Alemtuzimab, there was one death from lymphoma which may have been related, and there have been rare but potentially fatal kidney problems.

At present Alemtuzimab is going through the licensing procedure. Once it has been licensed, it may be rationed, and only offered to those who have relapsed on the normal DMTs.

However, the CAMTHY trials, which are testing to see whether a particular drug given with Alemtuzimab can make the treatment safer, are currently open to anyone with MS in the UK who meets the criteria. You need to have RRMS, have had 2 relapses in the past 2 years, be able to walk without a stick, not have Insulin dependent diabetes or thyroid problems, be under 50, and not have had previous immunosupressant drugs ( but DMTs are ok)

Because I’m not involved in the research, and don’t have the time to analyze it thoroughly, I can’t present the risks and benefits any more clearly than this at this point. You can read about the work done so far here: http://www.colescambridge.org.uk/index.htm

and about how to be referred to Addenbrookes to discuss taking part in the trials, here:

http://www.colescambridge.org.uk/trial%20participation.htm, and if you are seriously interested and meet the criteria, you can discuss the pros and cons with one of the doctors running the trial, at Addenbrookes, after referral by your GP or MS Specialist Nurse. It may be worth reminding your GP that there is not a cost to them for this referral or treatment, as the trial has its own funding. Worth very serious thinking about.